It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.
I’ve never believed that every cloud has a silver lining or as the German philosopher Nietzsche said, “That which does not kill us, makes us stronger.”
My husband’s debilitating dementia had no silver lining, and it made neither of us stronger. John’s decline was marked by suicide threats, crying jags, and psychotic episodes that landed him in the geriatric-psych unit for weeks. Once he even managed to hurl himself out of a reclining wheelchair. He knew he was losing his mind, and he objected.
By the time we first started dating thirty-six years before, I’d had my share of relationship failures, including the breakup of my first marriage, which I felt so guilty about that I split myself into two people: the one who wanted to stay, and the one who wanted to leave. The two argued incessantly, and I was always trying to make a quick getaway in the hope that I could escape one of them and find some peace of mind. The one who wanted to leave turned out to be my better half, and ultimately we both left my husband.
In contrast, John, an NYU professor seventeen years my senior, evoked the image of a steady ship in calm waters with his tall person, confident stride, and ever-present briefcase.
After we’d been dating for a few months, John left for a fly-fishing trip out west. I missed him terribly. Then late one night, the telephone rang in my apartment. It was John, calling from Last Chance, Idaho.
“I’ve been thinking about you,” he said. “I’d like to spend more time with you. In fact”—there was a pause on the other end of the line—“I’d like to spend the rest of my life with you.”
I was speechless, terrified that this was too good to be true. I panicked that I would ruin our relationship by panicking, and he would get sick of my panic and leave me. This created more panic.
All the same, that August we got married and moved into a 5th floor Chelsea walk-up. The panic moved in with me.
One day, shortly after we got married, John found me sitting on the apartment stairs crying. He was stumped. What the heck was I doing sitting there crying about nothing?
Eventually it occurred to me that John wasn’t going to get scared off by my panic attacks. He loved me whether I panicked or not.
“You’re playing to an empty house,” I told myself. “Why don’t you just relax and enjoy the relationship?”
“Why don’t you just relax and enjoy the relationship?” That was some of the best advice I ever got.
That was some of the best advice I ever got.
From the beginning, John expressed unshakable confidence in my dream of becoming a writer. Not only did he think I would be a writer, he believed I already was one, even before I demonstrated the talent or tenacity. That someone believed I could actually accomplish anything was a novelty for a girl who had grown up with a conspicuous lack of abilities or even intelligence, at least that anyone took note of.
I spent most of my time as a child obsessing about the unsettling fact that I had been born, which meant that one day I would die. When my parents took me to see a movie about the Titanic, I became alarmed by how swiftly and haphazardly death could come. One minute you’re singing and dancing, and the next you’re drowning in the North Atlantic.
Kindergarten came as a rude interruption to my existential preoccupations, and I almost flunked out. My mom said I was dumb, like her which was sad because she was more confused than dumb. My teachers said I needed to adjust, which never happened, and my first husband, whom I married at nineteen, said I was an idiot to think I could ever be a writer.
With all my worries about getting shipwrecked in the icy Atlantic, bad grades, and a husband who assaulted my intellect on a daily basis, life was a challenge.
Until John. John not only believed in my dream of becoming a writer, he believed in me as a person, in my innate goodness. If faith is the evidence of things not seen, then he had more than confidence in me – he had faith. And because of his faith, I became the person he believed me to be (almost) and the writer he believed I would become.
Then John had a stroke. Now, I had something concrete to panic about.
My efforts to keep John alive and safe felt like trying to outrun a truck that was careening downhill. The stroke was followed by multiple falls, fractures, seizures, and surgeries. Eventually he could no longer walk. The cost of hiring round-the-clock nurses ($18,000 a month) was out of reach, so I placed John in a memory care facility close by, and visited him every day. I brushed his teeth, played Bach and Jessye Norman, exercised his legs, and reminisced about the past. When our daughter, Annelise, talked to him about college, his face lit up, if only fleetingly. But our separation made me feel like I was leaving this man who had always stood by me, or that we were leaving – or losing –each other.
“I couldn’t find you,” he’d cry, when I visited him. “I didn’t know where you were. I didn’t know who I was.”
Now he was the one panicking.
For John, I existed in a dream: an apparition of memory, love, and self, miraculously appearing out of nowhere, then vanishing just as mysteriously.
Sometimes I’d hold his hand. “You’re magnificent,” I’d say. And then he’d have more than himself for just that moment; he’d have us.
As time passed, I witnessed fragments of his mind fall and shatter, like pieces of an antique lamp. He was a brilliant man, and some of the pieces glittered.
As time passed, I witnessed fragments of his mind fall and shatter, like pieces of an antique lamp.
Late one night the telephone startled me awake. It was a nurse on John’s floor.
“John’s screaming and we can’t calm him down,” she said. “Will you try talking to him?”
A few minutes later the nurse handed John the phone.
“I’m not even French and they’re trying to kill me!” he yelled.
Oh my God, I thought, he’s in the French Revolution, which wasn’t surprising since he taught 18th Century literature and history.
I did not succeed in calming him down that night, or bringing him into any other era, including the present.
Ultimately, everything faded from his mind: his passion for teaching, his joy in his students’ success, people and places from the past. But when all that had vanished, he still knew me and our daughter. The details of our lives – where we lived and what filled our days – eluded him, but he knew who we were and what we were to him.
Still I was not prepared to call that a silver lining. A titanium lining, at best. Titanium, I knew, blended strength and practicality with a high melting point: just like me, since I’ve been known to blow a fuse now and then.
“Are we married?” I asked him one day, after yet another stint in a geriatric-psych hospital. It had been two years since he’d moved to the memory facility, and he was fading fast.
John gazed at me fiercely, in spite of the haze of dementia and truckloads of tranquilizers and anti-psychotics he was on.
“Absolutely,” he said.
Three days later, he was dead.
His death brought new questions and dilemmas. How could such a tremendous (though diminished) personality simply vanish? Could he still see me somehow? Would we meet again, on a trout stream one summer evening: he casting a fly, me reading on a grassy bank nearby?
A friend told me her late husband returned as a thrush one spring morning, and trilled a song to her from the treetops. Was the bird singing outside my window, John?
At John’s burial, our friend Gary, who knew John years before I had, said a few words.
“When I met John he was a kind and serious man, but emotionally heavy,” he began.
Old friends who had gathered around the gravesite nodded knowingly.
“In the periodic table there are transitional metals like silver, gold, ribidium–heavy metals,” Gary went on. “When John met Pammy, his soul lightened. Nitrogen, hydrogen, helium – these are the elements he inherited when he fell in love.”
The word “helium” brought laughter and recognition. But no Nietzschean strength. I wondered when I would recover.
Yet, with time, John’s confidence in me, his very essence, has became a part of me, of who I am and how I make my way through the world. Gradually I have grown more serious, more solid.
I still panic about nothing, but every once in a while I catch a glint of those transitional metals Gary spoke of at the gravesite that day: gold, rubidium, and, yes, silver.